Article
9 comments

Living with IBS: Claire’s Story

We all know by now that IBS is not a sexy topic to blog about, however seeing as it likes to engage in a daily battle with me, it’s something I’m going to continue to waffle on about. Especially as 1 in 5 other people suffer from the same gut-wrenching symptoms.

In the first of a new series I’ve asked fellow IBS sufferers from all walks of life to share their experiences, their triggers and how they attempt to control them. Proof that we can start to make IBS less of a taboo subject.

Warning: it’s all bowel movements and bloated bellies from now onwards…

First up we have Claire from Chesterfield, Derbyshire.

How did you know you had IBS?
I’ve ‘assumed’ I’ve had IBS for about 17 years, but was officially diagnosed about a year and a half ago after having a barrage of tests, cameras in places that no one wants to be having a ‘selfie’, radioactive tablets, scans, samples…the list goes on….and on….and on.

Gastro: “Good news Claire, it’s nothing serious, you’ve just got IBS”

Me: “….and where’s the good news?”

That was pretty much it, but I asked to see a dietitian about the low FODMAP diet, so then was referred to see him. Other than that, I think Id have just been discharged and left to it.

How do you cope with IBS on a daily basis?
I feel that IBS pretty much chips away all the time, even during a ‘happy gut’ time, making plans any further than a day ahead is usually followed up with …’if I’m ok’. Awful habit that I must get out of, but I’m so fed up with having to cancel plans at the last minute, so feel I should give some kind of warning.

I predominately have IBS-D, but apart from peppermint capsules now and then, I never take anything for it, as I don’t want it to swing the other way and then can’t go, as that’s just as unpleasant. As I mentioned I eat low FODMAP now, so that has helped. To start with it was like a miracle, I started on a Monday and by the Thursday, I quite literally felt like a different woman. A woman that functioned, had heaps more energy, could wear the same clothes all day without having to change into something looser to allow the 6 months pregnant look to bloom!

I also found it quite unnerving that I couldn’t ‘feel’ my digestive system. I thought everyone had a constant undercurrent of, not what I’d describe as pain, but an uncomfortable constant ache which was only interrupted by proper pains, stabbing feelings, cramps, a twisting feeling, bubbling, you name it, it would go on and on and on throughout the day and more often than not in the evening, the small ‘party in my intestines’ would come to a head and all hell would let loose.

I’d set up camp in the bathroom for a significant amount of time in agony. Truly real agony. I’m a mother of two and gave birth with no pain relief at all, I don’t see myself as a lightweight when it comes to pain, but I’d rate the pain levels the same.

Sadly the reintroduction phase of the low FODMAP plan hasn’t been incredibly successful for me and I’ve been in a very bad state when challenging foods, so I’m left with a pretty restrictive diet, but I try to reintroduce foods every few months, as things can change over time.

As most people with IBS, especially IBS-D, I have gained the ability to spot a public toilet from a mile off. I have a radar key to allow me to use disabled toilets when things are desperate (and I also find them much cleaner and more private in general). I also have a ‘I can’t wait card’, from the IBS Network that explains that I have a condition that means I may need to use the toilet urgently. I’m yet to use it and to be honest I hope I don’t to, as it would mean things were pretty dire.

Reintroducing garlic to my diet – The ‘large’ photo was when the garlic effects kicked in, the ‘smaller’ photo was the morning after, there is still some bloating, but it’s mostly gone.
Any life-changing tips of how to deal with symptoms?
Life changing- sadly not, no big revaluations here. Prevention is obviously the better way to deal with it, so I’m careful to follow the low FODMAP diet with the things I know sit well with me. When I have days with the undercurrent of aches and bloating and/or trapped wind, I generally spend the day with my jeans unbuttoned if I’m out (thank goodness we have such awful weather and I can wear long tops/coats), if I’m at home, I’ll get back in my PJs and I honestly don’t know what I’d do without my trusty hot-water bottle. It’s like a warm hug for my angry insides and the only thing that can comfort any discomfort or pain. I do take peppermint capsules when things are bad, but I try not to have them too often, as they tend to slow things down too much if I take them two or three days in a row.  Of course stress can play havoc with IBS, but it’s so much easier to avoid foods than stress/anxiety, that one I’m still working on.

I am always doodling when on the phone, or sat not really thinking with a pen and paper in my hand, so I’ve actually started sitting with a drawing pad and pen, switching my mind off and doodling, sounds odd, but I find it incredibly hypnotic! I think everyone has something they can probably delve into to switch off their minds for a while.

Any products you’d recommend?
The only product I use is Colpermin peppermint capsules. I’ve tried others before but they’ve given an awful heartburn type feeling, as I think they would break down too early and make me feel really sick. I’ve never had that with Colpermin and an added bonus, they make you smell oddly minty!

Foods you swear by and foods you swerve
My go-to foods after a flare up are porridge, bananas, mashed potato and plain fish, not all at the same time obviously! My avoidance list is quite long, I see food and see FODMAPs. Even before the diet I’ve avoided fried foods, caffeine, spicy food and quite a few fruits as I know they upset me.

What’s the food you most devastatingly miss?
Well I’d have originally said chocolate and cakes, but I think overall it’s just being able to eat out, grab something on the go, not have to plan ahead so much. I have massive problems with onion and garlic, it’s only when you try to avoid them you realise it’s in just about everything in foods when out, but it is possible to ask people to tweak things. I’ve started sniffing the kids yummy foods, if they have a bar of chocolate or something, I have to sniff it first, as I can almost taste it that way. Am I sounding weird yet?

What’s a typical weeknight dinner? 
A typical dinner would be lean meat such as chicken or plain fish, mash, carrots and green beans. I also love pasta and the rice pasta and gluten-free pastas really aren’t that bad. If I make the family something like cottage pie, I just take a small portion for me when cooking and make it without the things that upset me.

I also batch make soup and freeze it, a great quick easy way to ensure you’re getting a tummy friendly nourishing meal in the same time it would take to heat up a fatty, pretty tasteless, E-number filled ready meal.

Do you feel your lifestyle has changed?
I do feel my lifestyle has changed, in some ways for the worst, in someways for the better. Obviously when I have flare ups they aren’t good times and I want to stay home, and it knocks my confidence hugely. I’ve turned down numerous invites to places for different reasons based around my gut, it can be something as simple as I literally can’t fit into anything other than my PJs due to the massive bloating!

On the more positive side, I now feel like I’m nourishing my body more rather than opting for quick fixes and sugar cravings. I’m currently setting up my own local IBS support group with the support of the IBS Network, who do great work and help people with IBS feel validated. I’m hoping the group will give others a chance to talk about their issues with people who will understand and also build my confidence and self worth too.

What do your friends and family do to accommodate? 
My husband does the lion-share of the shopping and is pretty good at scrutinising ingredients for me. I have my own cupboard in the kitchen to stash my foods, so it’s easier for me and it stops the kids eating my foods as they are often so pricey.

My kids are also good at spotting things I should be careful with. If I don’t take my reading glasses shopping with me, I’m pretty stuffed as I literally can’t read most of the ingredients, so the boys are my eyes! My eldest son also loves to come to the Free from and Allergy shows in London and Liverpool. I would get completely lost in London, but he gets me there and back in one piece and he also loves to sample the freebies at the stands.

If I’m honest I’m not sure how much most other people understand just how debilitating living with IBS can be. I have other conditions too, including epilepsy. People are great and understanding of that, but in all honesty it’s barely an issue for me as I have pretty good control these days and the seizures I do have are very small and pretty unnoticeable, but society as a whole are pretty understanding. IBS seems to be seen as a bit of tummy ache and not a lot more, so I often feel people think I’m making a mountain out of a molehill, it’s all in my mind and a good excuse to not do things.

After I’ve had an attack, the feeling is way more than in my gut, I feel like I’ve run a marathon, I feel weak, shaky, incredibly lethargic, dehydrated and have a headache, the next day I feel like I’ve been kicked in the stomach by a horse.

How would you explain IBS to others?
If I had to explain IBS to a stranger, I guess the answer would be it is a collection of symptoms such as pain, bloating, diarrhoea, constipation, trapped wind and very noisy insides. I don’t think that list is exhaustive and they can differ from person to person and even in one person the symptoms can differ from day-to-day and week-to-week. It is common and the pain stems from the large intestine. For me the pain is sharp, twisting, stabbing spasms and when at its worst it’s completely unbearable. The diagnosis of IBS is generally given when everything else has been ruled out.

9 Comments

  1. Hi Jo

    I’ve just read your blog and can definitely relate and sympathise as I too have IBS – diagnosed after the same raft of tests and cameras just over a year and a half ago.

    I live in the same area as you and would love to know more about the support group you are setting up.

    Thanks

    Gem

    Reply

    • Jojo

      Hi Gemma, welcome to the IBS club! Do you live in the same area as me or Claire? Xx

      Reply

      • Hi Jo

        Apologies I meant to put Claire (I have the not so lovely cold that is doing the rounds at the moment so will blame it on that and the lack of sleep it is giving me lol)

        I live in the same area as Claire so would be interested in finding out more about the local support group she is setting up if that’s possible.

        Thanks

        Gem

        Reply

        • Jojo

          Hi Gem, don’t worry, I have that same cold!! Let me message Claire and see how I can introduce the two of you! X

          Reply

          • Thanks that would be great.

            Hope you feel better soon! xx

  2. Oh my gosh, thank you for sharing your story!! I was diagnosed with IBS a few months ago but i’ve known for quite some time somethings been wrong with my body and how it functions. You are 100% right, people think I am making it up or that its just tummy pain but its so much more than that! Jeans have become an absolute nightmare! Yoga pants has become my best friend. Thank you so much for sharing your story xx it makes me feel like i’m not alone in this battle

    Reply

    • Jojo

      Devlin, you are definitely not alone. There are so many of us battling IBS and jeans! Stay positive as it will get easier to live with. I blog about IBS A LOT so hopefully some of those posts will help you! Jojo x

      Reply

  3. I am in Guernsey and if you do a support group online please let me know.

    Reply

    • Jojo

      Hi Lara, I’m afraid it’s not something I run however, feel free to ask any questions as I’m happy to answer! Jojo x

      Reply

Leave a Reply